I made a slideshow of our trip to Faith's Lodge last fall. The retreat for families who have lost a child. I think the song with it, Word of God Speak by Mercy Me absolutely fits these pictures since we could feel such an amazing calming presence in that place that I will never be able to describe.
4th of July weekend is huge in this town.. Huge. Our population swells as the terrorist.... Er..... Tourists park themselves in this tiny 6 lakes town and do what those in Wisconsin do best. Drink enough beer to drown.
Hailey had 8 events to attend as jr miss vassador and by the time I caught up with her saturda she was already exhausted. After a brief tantrum... Teen girl style she was able to regroup and continue, sunburned and tired. I felt the need for a tantrum of my own and I didn't have to run around half as much as she did.
Chris had his last game of the season last night and they finished with another win making for an undefeated season!!! Now on to tournaments! They even finished the game with a homerun!
Pics aren't great of course I forgot my camera and had to get what I could with my phone.
Monkey pile!!!
I'm often baffled by the "better-than's" of the world. You know them, the people who have to have what you have, only a better. The people who simply cannot be happy with what they have and who they are that they constantly have to prove that they are superior to somebody else.
We've all dealt with them, maybe some of you are, without realizing it, those type of people. I don't know. But it really irks me I tell you. Irks me bad.
Unfortunately it isn't always involving material posessions. Usually the better-than's are so miserable that they will tell outrageous stories and skew the truth to make you think they are happier than you. It's downright amazing sometimes how some people appear to have absolutely no bad times in their lives, or if they do it was always someone else's fault anyway. They have a hugely overactive sense of entitlement and seem to get caught right up the little fantasy world they worked so hard to create.
Unless the better-than's are very careful, occasionally the truth will shine through and you just kind of sit back scratching your head, or maybe you muster a little internal chuckle, if you are like me. Such as when a better-than's teenager takes up smoking or when that teenager makes sexual references in front of adults. And when they realize that this doesn't quite match with the perfect little family they have created to the outside world, they rationalize it by falling down to a teenagers level and imitating the behavior themself. As if to say "see? I think it's ok that he says that.... so much so that I say it too". When you are pretty sure it's not something that any adult with any ounce of maturity would say, let alone to a child. I don't know, maybe I expect too much out of my children by teaching them respect.....
Ok so I'm straying a little. I can't help it, Craig and the boys are watching a movie and it's distracting.
It's too bad money can't buy contentment, isn't it? Money can't buy a lot of things. It can't buy love, it can't buy a family, and it can't buy happiness. Becoming comfortable with who you are and not allowing what you don't have prevent you from being happy with what you do is the key. It's something that in this world of instant gratification, money, greed, and materialism we have to think about daily, always reassessing and always taking inventory of what makes us happy. No keeping up with the Jones', not trying to be perfect, not trying to impress anybody... just being us and at the end of the day being wholeheartedly comfortable with that. There's a big difference in striving to be a better you and in creating the persona of a better you.... the latter is never satisfying.
People will often say that contentment is another term for complacent. That being happy with your current life is failing to try to improve it. And I can't help but wonder why they think that's a bad thing? Why does it always have to be better? Why do we always want more? We all have struggles in life and I guess for me it's about looking at those struggles and deciding what you would trade for them. No one has it 100% perfect all the time. Sometimes we live paycheck to paycheck and it can cause worry, but would I trade my 6 healthy children, my home, my husband, or anything else I have for the money I may not? Would I trade my fertility or time with my husband and children for the ability to buy $100 wicker baskets or foo foo trinkets for my dining table? No way! Sounds kind of silly to me. But Whatever.
Mama Outloud's post on talking with her daughter about dying got me thinking about how my own children learned about death.
Before Alex our family really had been fortunate in not losing family members until a ripe old age. A year before Alex was born big C's grandfather passed away. In telling the kids about it we used the same technique most parents do. "Grandpa went to heaven to live with Jesus and now he can do cartwheels and ...." was enough for them. They hadn't been close with him because of space distance and it wasn't very traumatic for them as such.
So after Alex died when the Child Life guy (our savior that day) told us that our children had arrived and were waiting for us a sense of panic washed over me. What would we tell them? "Just tell them the truth" said the Child Life guy. "Children have a keen way of making whatever you are upset about their fault" he said, "it's best to just come out with it".
So we walked into the room and Craig sat on the sofa and I sat on the chair. I just looked for a minute at my children, noticing the anticipation in their eyes. I remember thinking "oh no, they think it's GOOD news" by the excitement that seemed to be coming from them.
I don't know how or why, but I just blurted it out
"Alex had to go live with Jesus"
And the world once again went into slow motion. I saw Little C run over to his dad as the tears sprung from his eyes. Hailey came to me. I was numb. It was the hardest thing I've ever had to do, hands down.
"You did a good job" the Child Life guy said to me as we walked out of the room. But I felt anything but good. I felt like I had just single-handedly ripped my children's hearts from their chest. And I had.
That day my children gained a premature understanding of their own mortality. Children die. What once seemed to them like something that only happened to old people, now became something that could happen to them. In the blink of an eye their sense of peace and safety was gone.
Of course the youngest, Jack, didn't really get it. Always asking us to buy baby Awex whatever cute shoes were on the rack at the store and asking when Awex was going to come home. He was only 4, after all and the idea that people could go away forever and never come back was beyond what he was capable of understanding completely.
Could I have prepared my children better? I don't think so. I don't think they could have come even close to grasping the concept without living through it.
I do know that we chose not to shield them from any of it. I remember being a child and not being allowed to attend my uncle's funeral and as such I had no concept of death. I knew that he was gone, but I didn't graps the finality of it.
Our children held their brother's body. They wrote him notes and attended his funeral and burial. In being included in those steps they gained understanding, and maybe some acceptance.
If your children bring up the subject of death be as honest as you can be without scaring them. Take them to a beautiful cemetary and show them where bodies go when people die. Share your beleifs about the afterlife with them. Don't freak out when they ask questions you don't want to answer, accept the opportunity. I only wish I had taken the time to do prepare my children what little I could.
I think talking about death with children scares us so much more than them because we can't bear the thought ourselves that someday they might die. What do you think?
When you think of Wisconsin what do you think of? Cows? Snow? Ice? Hell frozen over? Well, would you guess Wisconsin has some killer heat too? And not just heat. Heat that makes southerners run for the ER because they feel like they are breathing water. Not kidding. I don't care what anyone says, it really isn't the heat, it's the humidity. Try this for me, stick your head in the sink and breathe. Yeah, that's kinda what it's like.
Let's see, what else. The pageant is on Friday! I know I said we wouldn't go through that hell again but Shay had fun, and at the end of the day that's all that really matters. This year Hailey is in it as well so I'm going crazy x2! It'll be a load of fun though.
We didn't end up seeing the Endocrinologist for Nate. We had a bit of schedule interference but I don't think I'm going to reschedule it since.......... he's drinking and peeing like a normal boy! Ok maybe a bit more than what I would consider normal, but nothing like he was.
In other good news Chris had his 4 month GI check up today and he gained 4.5 lbs since last time! It's not as great as it sounds since just before the last visit he'd lost 4 lbs.... but a gain is a gain and we'll take it. GI wants to see him again in 6 months.
Baseball is almost done for Chris already. His team is currently undefeated with only 2 games (I think) left before tournament. Maybe they can make it all the way!
Not much else to report. Boring is goooood.
At breastfeeding class. Isn't my breastfeeding baby the ugliest baby ever?
Ok, so I've blogged about this family before HERE, you know my opinions on the family. But of course the world is a buzz about Jon and Kate going through the big D.
First I'll state that I think sometimes divorce is inevitable. I think there are some situations and some couples who honestly need to go separate ways to find happy. There are people very close to me who I've seen make an amazing transformation through divorce and come out the other side a little tattered and torn, but finally on their way to happy. There are people who try for years to make something work that doesn't have a chance, who make all the changes they can and look into every avenue to find out what isn't working and attempt to fix it. Sometimes it just isn't going to happen.
Jon and Kate. Am I the only one who sees the obvious here? I almost chuckled when Kate said "parents of multiples an 3x the chance of divorce". Not because it was funny, but because I instantly wondered if she had taken into consideration what the rate of divorce is for people with reality tv shows. Hulk and Linda Hogan, Jessica Simpson and Nick Lachey.... jeez really I can think of more families with reality shows who have divorced than who haven't. Has that ever really crossed her mind? That maybe that show is really at the heart of what is destroying her family? Cause I tell you what, seeing my husbands (and Jon's is pretty obvious) hatred for his entire life being played out in the media would have put that show #1 front and center on the list of "things we will change to save our marriage". But no.... Kate give up her cash cow? Kate be a "normal" mother and wife instead of a media whore? Couldn't happen!
Another reason her statement made me snort is that she always sees herself as this woman who was thrown into this and has all these things happen to her and this is why blah blah blah. Here's the thing. Do you know what the divorce rate is for couples who have lost a child? 50%. HALF of all couples (and unfortunately losing a child is much more common than having a litter of them) will part ways. HALF! This statistic and hers means one thing, those of us in these circumstances just have to work that much harder at our marriages. When the going gets tough we can't wait for it to get better, we have to throw everything else to the curb for a moment and address the problem.
Another thing that bothers me is when Kate was asked what bothered her the most (or something along those lines) her response was "the label". What?! Really?! What about the fact that your kids won't get to share their days with both of their parents? What about the look in their eyes when you tell them daddy lives somewhere else? What about the day when inevitably your children blame themselves? Because they will. They will because that's what kids do and those kids especially are going to think "wow, we must be a lot of work for them" or "daddy must be sick of us that's why he left". That's what kids do. I can think of a MILLION things that I would be far more worried about then the label. But Kate can't stop thinking about how she looks to other people, what other people thing. Kate can't, for once, put her family first.
I'm not saying Jon is innocent. Marriage takes two. It's not even 50/50 it's more like 100/100 because if you aren't putting 100% in, you are failing. I'm just calling it as I see it.
Disclaimer: The following video shows Alex's story in it's entirety. If you feel you may be disturbed by sensitive images, move on. Blah blah blah.... End disclaimer.
So lately I've been freaking out about the idea that someday all my babies are going to be grown up and move on and not need me anymore. And quite frankly? This idea scares the shit out of me. You see, I've never been an adult without small children. Austin was born when I was 17 and a senior in high school. By the time I was an adult my existance basically was dictated by the next diaper change and well-baby exam. And with children born every 2ish years thereafter for a few years (went 13 years changing diapers STRAIGHT before getting a 2 month break between Jack's training an Nate's birth) I don't really know HOW to be a childless adult.
Today is really bad. My kids are spending the weekend at my moms. I came home from work to an empty house and here I sit, alone. I don't like it. Not one bit! Seriousely, commercials are making me cry.
Realistically I know that I have just about 16 years before empty nest will actually set in, but with Austin turning 18 in a short 2.5 years I'm starting to really freak out.
So the doc called today with nathan's MRI results.... Perfectly normal! While this Is great news it means we still don't know what is causing his excessive third and now horrible moodiness. She reffered us to a pediatric endocrinologist for further investigation. Why can't anything be easy?
Tomorrow begins the kids' week of school for the year! Woohoo! I love summer vacation. I love that we don't have to get up at 6am or go to bed early or spend time on homework. We can spend days at the pool and lounging around and stuffing our faces with chocolate...... oh yeah, I forgot..... Craig and I don't get summer vacation from work. Bummer
Nate's MRI on Friday went stellar. I started off a bit irritated when I told the nurse that he's a very difficult IV start. I don't know why I ever bother to tell them because it seems when you say that suddenly their chests puff out and they go into superman mode because they KNOW they can do it easily, darn fools who tried before. Beleive me, Nate's had people who were very good at what they do put his IV's in before and I'm not joking when I say he's a hard start.
So she's looking for veins and I tell her she's likely going to have an easier time with his left hand. Stupid on me again because she decideds he has a wonderful one on his right hand (yeah, that one has fooled many a needle jabber before) and goes to it.
Yeah, 15 minutes later (do have to give her credit, I think that's a new record) she finally has access and wipes the sweat off her brow and says "Wow kiddo, you were a harder start than I thought!" HELLO!!! Did I not tell you that? But right, I'm just the parent what do I know. Only been down this road a time or two.
Thankfully the rest of it went smooth as butter. About 15 minutes after getting a good 3/4 of the nasty tasting Chloral Hydrate into him he was sawing logs and we were headed down to MRI.
I was quite surprised at how upsetting it was to be following our sleeping child in his hospital crib down the halls. Soooo many memories and fears came to the surface as I got a sense of deja vu of the events of 3 years ago. I had to keep convincing myself this was only an MRI.
45 minutes later out comes our sweet baby, wide awake but looking around in a daze. He had slept the entire test and woke just as the nurse was lifting him off the MRI table. Can't ask for better than that.
Back up to our room and Nate was on cloud 9 finally being allowed to suck down cup after cup of "appie juice". Poor baby hadn't had anything to drink since 6am and it was now 1pm. After he kept down his appie juice and jello and graham crackers we got to leave. Again the feelings flooded me as we walked out of the hospital WITH our son.
Hopefully we'll know the results tomorrow and will have some answers to the mystery of our little "water boy".
Yesterday we went to the cities for my cousin's wedding. It was a beautiful outdoor ceremony that was made better in that it lasted a whopping 10 minutes. We left at about 7 pm and brought my sister home and I headed home with the kids.
As I was leaving my sisters house she asked which way I was taking home and I said "well probably 64 to 53". noooooooo, don't go that way 64 is horrible with deer. (Which ya know, I have to take her word for it... this is the girl who's Malibu has been completely replaced in the front end, TWICE, from car vs deer accidents).
You can go 64 to 63 and then take D at Clayton straight into town. I shrug my shoulders and say goodbye.
On the way I decide to take her advice, remembering all the curves and hills on 64. So I turn on 63 and at Clayton I take HWY D. I start to panic a bit when I see us leaving the county we live in and entering D-county but am releived when We pass a town I recognize and I think WHEW, almost home. After about 30 miles or so I come to a T in the road. WTF? So I try to think about where I am and figure the left is the best option. Well this is Hwy V and Hwy V takes you in nearly a complete circle before going North. Starting to panic (as my gas guage dips lower and lower) I call my sister on Hailey's phone (Because mine had no service, apparently AT&T's "more bars in more places" motto discludes Butt-fuck Idaho) and after a minute we figure out where I am. Ok, go another few miles and you'll hit HWY 25, take 25 straight to Barron.
Ok so I get to 25 and somehow after all the circles I made my internal compass got completely turned ass backward. So I start going South on 25 and think "wait, this doesn't seem right" I realize that for that second my phone has 1 bar of service so I use my GPS to find my current location and hand it to Austin and say "watch and tell me if the little blue dot is moving toward or away from Barron"
After a few minutes he says "away, turn around". FRICK! Glancing at the gas guage again. O-M-G. Ok, we might make it to barron. Just then Austin says "mom, the GPS says the road coming up is A and shows Dallas! Ok, Dallas is on A and Dallas isn't far from where we live. Thinking that from where I'm at I probably have enough gas to get home on A, but not to Barron I make the decision to take A.
Well, did I mentioned my brain compass was all f-ed up? Yeah. Well so I turn on A and we go through that town I recognized before again and think ok, this town IS before Dallas, so we're good now. Chuckling that we'd now been through that town twice. (mind you these are tiny bitty hick towns that don't beleive in keeping gas stations open past 8 or having pay at the pump service). I call Craig (on hailey's phone again because again, I have no service) and tell him that we just went through P and I didn't know if I was going to run out of gas.
So we truck along and after a while I start thinking "man, I didn't think P was THIS far from Dallas...... And I see a sign that says we are entering Polk county (where my sister lives!) OMG OMG OMG PANIC! My gas guage is on E and screaming at me with it's stupid little light that I am about to be stranded in the middle of nowhere with 6 kids. Of course I don't pay for roadside service on the kids' phones and my phone won't F-ing work!
So Hailey, sensing my panic, calls my sister. I come to an intersection and my sister and I try to figure out where I am, since these two roads actually intersect in more than one place (wtf?) I drive a little bit trying to find any street names or anything that can help, while panicking about my lack of fuel. Of course all the tiny streets aren't listed on my sisters map. At this point I can't tell which direction I'm even going to help her figure out where we are.
About this time my mom, who was staying at my sisters house decides she's freaking out and is going to leave and drive home and find us. No amount of arguing from my sister, Hailey, or I was talking her out of it. Great, we are going to have all of us lost now!
So my sister makes a guess and tells me which way to head on A. She thinks we should be about 5 miles from Clear Lake (another town we had already gone through once) and she knows there's a BP station there with pay at the pump 24 hours. At this point I simply have no choice but to follow her gut because if I don't and continue to drive along these back roads aimlessly i'm certain to run out of gas. I gotta take the chance.
A few miles down the road we come to a town, it takes me a minute to find it but suddenly there it is, the beautiful glowing green BP sign! SAVIOR.
The canopy lights are off and the place is dark but thank-god for pay at the pump as I honestly think we chugged a couple times as we were pulling in, but I can't be 100% sure, that could have been my pounding heart.
Pump my gas and laugh as the pump tells me "your receipt is inside". Great, I think. Now i'm going to get pulled over for gas n dash because I don't have a receipt for my damn gas. Oh well, I just want to go home!
So we pull back out onto 63 (about 6 miles back from where we had turned on D in the first place, hours ago) and stay on it til I knew where I was, with certainty. Made Hailey text my mom to tell her we are fine, done come looking just go home.
Rolled into home at 12:30 and call my sister to let her know we are alive. I ask her about D and she says "well yeah, you don't really want to take that your first time at night because there's a tiny sign at the bottom of the hill that tells you that D turns left..... you musta missed that and went straight" Woulda been good to know!! "well, I didn't think you were gonna take it" she says.
Slept like a rock and didn't get up til noon. And I'm bout ready to tell At&T to shove all their bars in all their places up their asses.
So the results of the tests came back. His urine did not concentrate overnight (abnormal result) but his sodium didn't rise like they expected so the endocrinologist at this point is saying he's about 90% sure it isn't Diabetes Insipidus. However, this leaves more questions than answers.
Apparently the thirst center in the brain and the vision center are veeery close to the pituitary gland so given his drinking enough to drown and his escalating vision issues his doctor wants to get a really good look at his pituitary and see if something is going on there that would be aggravating all of this. So next Friday we go to Sacred Heart Hospital for him to be put under general anesthesia and have an MRI of his brain. He can't have anything to drink or eat from 6am that day (which is going to be H-E-L-L with a child that wakes up screaming for his usual 40 or so ounces of water for breakfast, we have to be there at 10am to check in for anesthesia and they will start the MRI at noon. It's going to be a loooooong day.
If that comes back fine we may have to revisit the Diabetes Insipidus and put him through what is called a water deprivation test. He would be inpatient for this and it doesn't sound like much fun at all!
So, it sounds like we won't know much for another week to 10 days.
So there's a news story from around these parts, Minnesota specifically, that is making national headlines. It is the story of a 13 year old boy named Daniel Hauser who was diagnosed with Hodgkin's Lymphoma in January. Daniel's parents, per religious and spiritual beliefs, have declined chemotherapy to treat his cancer based on their belief in the "do no harm" philosophy. They have decided that chemotherapy, being a poison, is harmful to their son and chose to attempt to treat his chemotherapy with holistic means.
Last year a little girl from here in Wisconsin died after her parents chose to pray for her healing rather than seek medical attention. The girl died from complications of Diabetes, more specifically diabetic ketoacidosis, a condition which is quite easily reversed medically.
I'm torn to be all honest with you. On one hand I truly beleive that if a parent does nothing to help their child recover from illness, that it most definitely constitutes medical neglect and they should be held accountable. However, the parents of these children were not doing "nothing". They were attempting to heal their children concurrent with their beliefs.
If you think about it, all current medical treatments were once questionable and unproven. Through successfull clinical trials they became proven and mainstream, but at one point they were all considered outside the normal medical definition of proper and appropriate treatment. Should parents who chose unproven medical trials be suspected of medical neglect? Should the physicians and drug manufacturers who enroll these people in clinical trials be considered to be doing just the same as these parents are/were? I just don't know the answer to that.
I don't know how I feel about it. Is it sad that the little girl with diabetes lost her life to a disease that could have been managed, allowing her to live a full life? Most definitely. Do most people think Mr Hauser should be treated for his highly curable disease with modern, proven, treatment protocols? Sure. But who are we to decide right and wrong for these individuals? God entrusts our children to us, to keep them safe from harm, to provide for them.... What does that mean?
I know many people who use alternative medicine. Who choose to treat UTI's with cranberry supplements and the like. Most of them however, I am confident, would turn to antibiotics if they needed to.... is that where the line is? At what point do you decide one treatment isn't working and move to another? I would think that line is very blurred.
Mr Hauser is currently missing, along with his mother. They flew the coop, and now this child likely isn't getting ANY treatment for his disease, holistic or otherwise. Whose fault is that? And where is the line now? Where is the line between being a team member in your/your child's medical care and having your choices removed from you? Do we all have to worry now that if we feel our doctor hasn't prescribed the best course of treatment we may be hauled into court and a judge would then decide what treatments we could or could not pursue and possibly put our children into a stranger's foster home and continue treatment you beleived with your whole heart was dangerous and wrong?
How scary is that thought? Think about that for a minute....
Where do our rights to govern our bodies and our children's begin and where do they end?
I'll blog about some things that have been bugging me a bit. You see, I think people are batshit crazy. From the idiot who stole my prescription glasses at the waterpark to the lady at the clinic this morning wearing bright yellow pants and a winter coat in 80 degree heat. People are crazy.
But some people take crazy to a whole new level. There are a few things that I just don't understand. I guess maybe I wish I had nothing better to do with my life than think of absolutely asinine things to define me, ways to make me different. But I don't. What am I talking about? Well in no real order, here are some things I've noticed lately that make me go hmmmm.
Conditioner only hair care- At first I really thought this was a joke. Really. But no, it seems there are some people who only use conditioner on their hair and never shampoo. WHAT? For real? Apparently the idea (and I admit I didn't spend a great deal of time researching this) is that shampoo makes your hair produce more oil than it needs, so if you stop using it your hair will produce less oil and be more healthy, luxurious, whatever. Some take this a step further and don't use any products on their hair at all.
Ick. Haven't you heard of DIRT? Water doesn't take the dirt out ya head dumbass. Maybe you have a few loose marbles rolling around in there already that need to be cleaned out.
Honestly though, i'll be the first to admit that in this country we bathe WAY too often. It's not good for our hair or our skin to be scrubbed so much. But there's a fine line my friend. A very fine line. No one wants to smell you when you don't bathe because you think bathing is the devil. And unless you never leave your house, don't think it doesn't affect anyone else. We smell you and see your greasy hair. Get some 99 cent suave, I don't care. Just use freaking shampoo.
Next is the "We only eat whole foods" group. K, nuts and berries only go so far. And for shit's sake stop blogging about it. We don't care that you eat turds and berries for lunch with a little flax seed sprinkled on top. It looks disgusting, I'd be willing to bet it tastes disgusting, and if you think your family is going to live forever and be running marathons in their 90's because if it you are off your freaking rocker. And you know what? Your kids are going to be PISSED off when they go to that first birthday party without you and get McDonald's and chocolate cake. Pissed off I tell you.
Again, I'll be the first to admit that in this country our diets tend to be atrocious. But seriousely? Spending rediculous amounts of money to buy cous cous and sticks and rocks to eat? S-T-U-P-I-D
Family cloth- For those of you with weak stomachs you might want to skip over this part. Seriousely.
Cloth diapers are one thing. Cloth diapers are safer, cheaper, cuter, and well just better. However, some don't stop there. They wear washable menstrual pads and *gasp* washable TOILET PAPER. Tell me, how many of you think it wouldn't be too bad to wash your husbands shit rags? GROSS. Toilet paper isn't that expensive and is biodegradable. USE IT.
And something that I find absolutely rediculous that isn't even connected to the "crunchy" scene. French tipped toenails. I cring every time I see someone in flip flops with a french manicure on their toes. And even worse? One day while perusing the nail polish aisle I saw PRESS ON TOENAILS. Oh my god....
I realize I have let you down again my blog readers, with my too long absence. Not that what I say is so important you'd be bummed out by not hearing my rambling for a week but, sorry nonetheless.
Once again I need to ask for your prayers. Once again we are dealing with a medical issue with one of the kids and once again we find ourselves with more questions than answers.
About 2 weeks ago Nathan started drinking an obscene amount of fluids. And by obscene I mean so much that we had to completely forget about cloth diapers, go to disposables, and then go up a size (which are too big) just to try to contain his colorlessly dilluted urine for an hour before he leaks through those too. How much water is an obscene amount of water you ask? Well "normal" daily fluid intake for his weight is about 39 ounces of water/fluids a day. He drinks that much with breakfast. He drinks 100-150oz per day, every day. Over 3x more than "normal"!
So yesterday we made an appt with the local bandaid station to have him looked at. They ran labs and thankfully ruled out type 1 and type 2 diabetes. His Creatinine and BUN levels were low (kidney stuff) but not too worrisome. Nothing looked bad. But........ then what?
The NP said quite frankly that she wouldn't even know where to begin and to get in with our Ped asap. Called the Ped's office and she didn't have any openings but we could see a visiting Ped from another clinic who helps out on Wednesdays at 10am.
So this morning after Nate did his routine drink enough to drown we piled in the car and headed to the clinic. After going over the situation and asking us all kinds of questions about his eyes (his eyes?) she goes and gets our Ped anyway who comes in and says they want to run some tests and these tests are normally done in the hospital but since he's two and controllable would we mind dehydrating our child ourselves, at home. Well, sure!
So Nate can't have anything to drink after 10pm tonight until his labs are drawn at 8am (gonna be a helluva morning for Craig, since I have to work!) and once those results are back we find out when he gets an MRI to look at his hypothalamus in his brain.
They think he has something called Diabetes Insipidus, or "water" diabetes.
I guess I don't really know what to hope for at this point. Something we can point a finger at or nothing and then we're left with a child that drinks enough to drown for no known reason.
Kids!
Disclaimer: I am not a doctor of any sort and anything you read in this blog should never be taken as medical advice. If you have questions about your health please discuss them with your healthcare provider.
So, the swine flu... er.... H1N1 (so as not to piss off any swine) is all the buzz. Masks and gowns and forms and all kinds of scary stuff. I personally think it's being blown a bit out of proportion.
The swine flu, as per the current CDC stats shows 141 confirmed cases of H1N1 in the United states, with 1 fatality. A 23 month old Mexican child in Texas. For a general reference we'll say that's 1 death per 141 cases. Now it will probably be much lower than that as more people become infected and don't, in fact, die. But with what we have we'll say 1 in 141. K?
As of today WHO, or the World Health Organization reports 156 confirmed cases and 9 deaths in Mexico. Making the mortality rate about 1 in 17, We have to keep in mind that many of these people were likely infected and ill before their doctors knew what they were sickened with, that in Mexico it's not uncommon for people to live in very close quarters with many family members, and that many of these cases were in poor areas where people likely had little means to seek medical attention.
Now, the regular run of the mill Influenza that many of us have had at least once in our lives kills about 1 in 125 people who are infected every year. Didn't know that did ya? Scary isn't it?
So really, the death rate from H1N1 in THIS country is already quite a bit below the annual death rate from influenza. And it's likely that gap will grow as this thing plays out.
The difference is that Influenza A and B, or "the flu" generally causes the most morbidity and mortality in people who are very young, very old, or who have compromised immune systems due to things like Chemotherapy and HIV. H1N1 seems to have a liking for making young healthy people very very sick, but why?
The shit storm.
That's what I like to call it anyway, because I'm all about creating my own terms for things to make them seem more interesting.
The immune system works by identifying an organism or virus and creating an immune response. That immune response involves releasing histamine, which, contrary to popular knowledge, is actually what causes your runny nose, sneezing, and other icky symptoms. Histamine is a great defense, but it makes us feel pretty crappy.
Generally we are exposed on some level, whether it be by vaccination or casual contact, to many of the germs we will encounter our entire lives when we are very young. We gain SOME immunity from this so that the next time we are exposed our immune systems may remember the germ and act quickly and efficiently to destroy it, or even if we aren't immune will remember bits and peices of it and work to kill it off.
What happens when we are suddenly exposed to germs our bodies have never encountered before is the shit storm. It is essentially an over-action of the immune system. Our immune system sees the new germ, realizes it has NO idea what this is, and freaks out unloading massive amounts of histamine into our bodies to destroy it. Histamine creates fluid which can fill our lungs, causing pneumonia and viola...... you are in ICU with a breathing tube and a priest.
So that's the problem with the Swine flu. We haven't encountered it before. Will everyone's immune system overreact like this? Nope. And no one can predict (as far as I know) if yours will or not. But this doesn't seem to be the norm.
Even still, I personally think the world is overreacting.
Common sense goes a long way. Good hygeine, hand washing, use of sanitizer. Stay away from people who are sick and stay home if you have symptoms. If you feel you may have the swine flu you can visit your local urgent care and possibly receive antivirals to make your illness shorter in duration (if you meet certain criteria I'd imagine)
And for cripes sake people. You aren't going to get it by eating well cooked pork. And if you are eating undercooked pork I'd be more worried about a tapeworm than the flu anyway. Have you seen a tapeworm? *shudder*
We are at the dentist with jack and chris. No doubt well have round 12,435 about why we don't give our kids poison... Er..... Fluoride.
Later taking Hailey to the dr to get a brace for her knee. Last night was her first track meet and she did awesome despite knee pain and a horrid stomach cramp and a team member who was a bit on the slow side ( in this politically correct world of keeping kids on teams whether they are any good or not). She got first in hurdles, the 1 by 400 relay and the 800. Unfortunately the slower girl ram 3rd in the second 400 and we were in 6th but Hailey as anchor got them to 3rd. My girl rocks! Pics of that to come.
For now I leave you with her always adorable little brother.
Craig and I went on a mini vacation a few days ago. It was a blast and Captain Morgan and Jose Cuervo tried to kill me, no lie. Thankfully my husband was there to put the kibosh on anything drunken related (how can he still be level headed with 16 shots and Lyrica in him?) We SO need to get away like that more often. I think next time we'll bring some friends so we don't end up sitting in the hotel bar spilling our life story to random strangers, but it was fun.
Shaylin is doing well. We were nervous about leaving her but she did ok. She's eating well again, still tires out quickly but I'm not expecting that to go away quickly, knowing how Mono works.
So, onto my exploration of my faith. As the title says, I've been thinking a lot about what prayer is, and why we do it. Then yesterday a friend sent me a sappy make you cry type email and I called her after I watched it and we contemplated the meaning of life, er, prayer.
I don't think many people use prayer as it was intended. I think prayer is a chat with God. A conversation of speaking and then listening just as we do with any other conversation.
So why, when someone is ill for instance, do we incorporate prayer chains and get on our knees and beg God to do our will?
You see, the way I see it, if God is who I've been taught he is. It's not really a popularity contest. A single person or a group of thousands isn't going to matter, is it? I mean, does God really hold contests and say "ok, if 15,000 people ask me to save this child, I will. Well no, it's not like that. So why do we recruit our friends, family, and strangers to pray for us in our time of need?
I've even noticed at family dinners people say things like "Bless this food and blah blah blah". Well, what if God doesn't WANT to bless our food? What if he has already decided that we are going to get a whopping case of salmonella from our eggs, is the fact that we ask him not to going to change anything? Is God just going to say "well, since you asked...." or, on the flipside if we DON'T pray for our food is God going to say "well, you didn't pray for your food to be blessed, so now you are going to vomit for 2 days".
I think many of us pray and it means nothing. It's just a simple ritual we do because it's what we have always been taught to do, just as we get out of bed and brush our teeth. Honestly our teeth don't really care if we brush them at 7am or at 9am.
Here's what I think. Stop jamming up the God airwaves with meaningless things, then maybe when we really need something it will get through.
I'm a HUGE fan of product reviews. I spend a lot of time (or not so much in the case of the impulse buy) researching products before I buy them. I do this because, well, I'm not rich y'all.
But the problem I have with a lot of product reviews, especially those that are written about electronics, just simply don't make any damn sense. No sense at all. See, I'm not really interested in how many gigapods or megapans are in it. Really, when it comes to storage space just answer me this question, "about how many pictures can I fit on this thing?" If the answer is "more than you'll need to" then I'm pretty much good.
I also love gadgets. So the Iphone was right up my alley. A combination of a PDA, a phone, an ipod, and a picture viewer sent me straight into busy mommy bliss.
But the price sent me into convulsions.
So I waited until I saw a sign stating that the Iphone 3G was $199 with a 2 year contract. And I jumped on it.
Now this was for the 8g phone and a second of panic washed over me. Would I be able to put a couple thousand pictures on it? The guy assured me that unless I was downloading poster size pictures I wouldn't have any trouble. So that decided it.
Now, I've had my Iphone for about 6 weeks. And I tell you, i L-O-V-E it. I love that it's pretty much geared toward the tech stupid in that everything has a picture. Just touch the picture and it takes you where you need to go. I also love that it has the REAL internet. If you are still using a phone with WAP internet you are most definitely not getting much out of it. Being able to type in a url and go to a web page that I can identify and meneuver around is priceless.
Another plus is having the ability to check my email with the push of a button. My phone Pushes (which apparently means it goes and gets my emails when I get a new one) and tells me when I have a new one. I find checking and deleting my overly abundant junkmail so simple on the Iphone I rarely use my actual computer for this purpose anymore. just tap the message and tap delete. It creatively shows the email being squished and dumped into a trash can even, which is oddly rewarding.
And then there's the apps. There are many free and inexpensive apps to choose from. Apps that turn your phone into a flashlight, a dog whistle (which I promptly required my husband delete from his phone..... apparently I have dog hearing), even a light saber so you can re-enact your favorite Star Wars episode with your friends.
Can't get through the day without knowing your horoscope? There's an app for that. Need to blog, facebook, twitter, or Yahoo messenger? There are apps for that. Need to diagnose your latest medical problem or find alternative treatments for ingrown toenails? Yep, an app for that.
The possibilities are endless and with just a tap, the app appears on your main screen for anytime access.
Itunes has come a long way too. I remember years ago when my son got his first Ipod shuffle, Itunes made me loathe everything MP3. But the newest version of Itunes is much more user friendly.
Wi-fi. Although withe the Iphone plan you'll get unlimited web time. The Iphone will also search for Wi-fi spots and alert you when you are able to steal someone else's signal. When connected to wi-fi your internet will run faster, so I encourage you to make use of it.
The bad? MMS messaging, or lack thereof. I cannot understand for the life of me why, in the age of the forward spam text, a sophisticated peice of techonology like the Iphone doesn't have the ability to send and receive picture messages. If you send me a picture message not only will I not get it, but I won't even know I didn't get it. So if you sent me a picture of your adorable kid, dog, or toenail polish and I didn't respond? Blame the Iphone. Fortunately? Yep, that's right.... There's an App for that! I have not downloaded it but have heard that it puts the picture on a url that you can click on to receive it. Me? I'd just rather you email it to me, where I can access it right from my phone.
Something else the incurable multi-tasker like myself will hate? Only one app can be running at a time. This is frustrating for me, since when I'm on the computer there are no less than 6 minimized pages going at all times. On the Iphone it's one at a time baby. Facebooking and get a text message? Sorry, you'll have to choose which to continue.
Oh, and another thing. Don't let the 3G thing fool ya. 3G isn't available everywhere (as a matter of fact, in Wisconsin you'll only access it in about the lower 1/8th of the state.
There are definitely things that the next Iphone version can improve upon. But my Iphone has become a huge asset to my busy life and I wouldn't trade it for a Blackberry if you paid me.
Ok, so these are just my thoughts, the thoughts of a mother who has lost her child.
As I've mentioned about 86 times. I read a lot of blogs. A lot of the blogs I read are of parents who have buried a child. Most of those blogs I didn't come to after the child died, but while the child was still with them, fighting for life. I am drawn to these blogs because I've lived that life. I've lived that rollercoaster.
I've also noticed that a lot of these blogs have huge readerships. HUGE. Which is great because the more people supporting these families, the better.
Unfortunately I've also noticed that when the child dies, so does the readership.
Why is that? Are people caught up in the drama of the minute to minute life or death rollercoaster ride of the critically ill child, and when the child dies, just as suddenly so does the excitment?
It saddens me to my core. Please realize that the roller coaster does not end for the family because their child has died. The roller coaster continues for a very long time. Maybe forever.
It just goes to show that as a blogger it's so very hard to know what people are interested in reading. Now, I write mainly for my own benefit (I'm a bit selfish like that), but I also like to write things that I think people want to know about too.
In looking through my site stats I've noticed something I never would have guessed. THIS POST on how to make Rag Ringlets Nellie Olson style is by FAR the most visited, most google found post on my blog. This post all by itself gets dozens of hits per day. Really?
This Post, which shows pictures of Lyme Disease in my daughter is a close second. Which is really ok with me because it's such an important topic, but sometimes you all surprise me.
But This post, on Breastfeeding, is probably my personal favorite.
Anyway. Just a little interesting.
Tomorrow Craig and I leave for our mini grown up only vacation. Ok, so it's a business trip, a food show. But a night away from the kidlets in a hotel all by ourselves doesn't happen often, so it's as much a vacation as anything. And hey, spending a day walking around sampling food isn't really my idea of work, so it's all good.
Did I just say It's all good? Good lord am I getting old.
So to say I spent a stressfull night is an understatement. A big one at that.
After a night of fitfull sleep I headed off to work. Shay felt like she wanted to go to school and who was I to tell her she couldn't, the poor girl who loves school and hasn't been able to attend in a week. So I do her hair and take a look at her rash that is still ever present and wish them all a good day and head off. On the way leaving her teacher a lengthy voicemail.
I get to work and call the clinic and ask them give a message to Dr K's nurse to please call me with the CBC results even though I knew the Lyme titer wouldn't be back yet.
And I wait. And wait. And wait.
I'm pretty sure there's some rule I'm not privy to at clinics that demand nurses wait until a parent is certifiably mental before they call with important test results. All day everytime the phone rang I'd jump on it, only to be irritated when it wasn't the call my every breath was waiting on.
Finally at 2pm she calls. She apologizes for the delay (she was only adhering to the 'stress out the patients mother' code of delay of course) and tells me that the doc hadn't commented on the test results until now.
She informs me that the CBC showed that her WBC is still low, as are her platelets and that her liver enzymes are elevated which the doctor has decided is suggestive of......
MONO.
My first gut instinct was that she was entirely wrong. However one of the things you lose when you have gone through having a critically ill child and then burying that child is the ability to trust your gut instinct when your child is sick. The difference between a parent who is blissfully ignorant and the parent who has lived in the PICU is that to the blissfully ignorant parent a rash is chicken pox, to a former PICU parent a rash is meningitis. To the blissfully ignorant parent a stubborn fever is a virus, to a former PICU parent a stubborn fever is leukemia. It's called Post Traumatic Stress. And I'm not sure I'll ever recover from it.
So, unable to trust my gut instinct I am left with the only feasable option. Trusting my doctor who sees that rashes are rarely meningitis and fevers are rarely leukemia. And I watch and I wait and I swear to god if that child so much as trips when she's walking I'm taking her to the ER and not leaving until someone does more tests, or gives me high doses of Xanax.
Oh, and the Lyme Titer was negative. Surprise.
So, a little something I didn't mention about Shay's ER visit was that her CBC came back with her WBC (White blood count) and Platelets low and her CRP (C-reactive protein) was elevated.
We had a follow up with her Ped today at 11. Craig took her temp early this morning and it was normal for once! unfortunately it was back up to 102.2 when we started getting ready at 9 (now day 7 of this thing) so I gave her some more motrin. While brushing her hair I noticed her chest was covered with a rash, upon looking more it's her chest, belly, and back and a bit on her face. It actually made me feel better thinking "good, now we have something the doc can look at, identify, and this will be over".
We get to the doc and the nurse notices just how absolutely pale she is, and how sunken her eyes are. Doc comes in and I give her the rundown of the past week and she asks Shay to get up on the exam table, noticing she's definitely NOT bouncing around as usual.
I notice how the doc pays careful attention to checking all her lymph nodes and feeling her belly. She looks at the rash and says "doesn't LOOK like a strep rash..... definitely doesn't fit a Lyme rash" but decides to run both tests anyway. She mentions her "really low" WBC and Platelet counts. She swabs Shay's throat which of course sends Shay over her limit (the child who usually tolerates everything with the greatest finesse) and she buries her head in her hands sobbing. Doc, who NEVER gives kids suckers must've felt bad cause she offered her one, which Shaylin declined by refusing to remove her hands from her teary face. The doctor leaves the room with a look on her face I've only see once before.... When she found Nate's heart murmer, almost a year to the month after we buried our Alex with a heart defect.
The nurse comes in a bit later with a sad look on her face and tells us the Strep was negative again (it was in the ER too), how sad that we all hoped for a positive strep test! So down to lab we go, all of us desperately hoping for a rebound of those blood counts.
Down to lab we go for them to poke my sweet girl once again. After about 15 minutes of visually looking for a decent vein and finding nothing the brave needle yielding lady decided to just decides to go for it with the one that looks like a maybe. She was very gentle with her digging, a gesture that was completely lost on my sobbing 8 year old who is doing her best to squeeze the thing in her hand to try to pump up her itty bitty blood vessels. Finally success! The needle yeilding lady collects a rediculousely large amount of blood, which I figure was a plot to get more than she needed, so as not to stick this poor child again. She hands Shay and Nate both suckers and gives Shay so many stickers that after filling the front of her own shirt she filled Nate's too.
Now we wait. The chance that it's Lyme is minute, it's not tick season yet and this is not how Shay presented before with Lyme. But we hope for Lyme because Dr. Google tells me that the most probable alternative is more than I think I can bear....
Will you all please say a little prayer to whoever it is you credit for miracles that my sweet baby girl doesn't have what my heart won't let me stop thinking about?
Ok, so it's no secret I've been REALLY struggling with my faith, or lack thereof, as of late. I guess it's probably a good thing that I struggle with it, as that has to mean I haven't given up on it entirely, right?
But, I just find myself bitter and angry. You see, it seems I can't see someone who carries their faith in front of them during times of struggle and not feel angry. What am I angry for? What does it matter to me?
I've been thinking about this a lot over the past few days and I think I've realized it. I really just feel like God let me down. Dropped me on my ass. Then kicked dog poop in my face while I was down. That's how I feel.
I get angry when I see people's faith because I always think "Yeah, just wait.... wait until the child you are so wholeheartedly praying will get better doesn't, then what"
Because that's what happened to me. I prayed and begged and loved that child with everything my soul had to offer and he died. MY CHILD DIED and went away FOREVER. And yours could too.
Or maybe it's a person who HAS lost the good fight, yet they continue to praise God over and over. I find myself with a huff thinking Why? Why bother? God could have spared you that pain but he didn't. Your child could be running and playing RIGHT NOW but he isn't. So how can you praise and thank God? The being who had the choice in whether or not that child lived or died? How?
To me it's the same as if some stranger on the street held a gun to your child's head and you begged and pleaded for him not to do it and he did it anyway.... would you praise HIM? Because I am not really seeing any difference.
I just don't get it. I think sometimes people just pray and pray and pray and hold out hope because they really don't know anything else to do. It's true when you are faced with decisions that are THAT FAR beyond your control you try to hold on to something that you feel you CAN do. And I guess that's ok if it serves that purpose in your life. When you are so far down that you need just one thing to hope for, I suppose it's ok for God to be that saving grace you cling to.
And I was like that. I didn't KNOW what else to do. I was so unbeleivably helpless that at least the faith that God could preform a miracle got me through the day. But then, when the dust settled and I realized that hope was gone, what's the point?
WHAT IS THE POINT?!
Posts
All Comments
